Imagine you've been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months. What would you do?
My name is Avery Lynn Canahuati, I'm almost 5 months old, and this has become my reality. But before I die, there's a few things I'd like to accomplish...this is my bucket list and my story.
SHARE IT & HELP ME TELL THE WORLD ABOUT SMA!

Wednesday, April 25, 2012

Dear Ellen, I need your help...

Each time I post an update, please share my story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers. And to all my girlfriends out there, tell your Ob/GYN about my story and maybe they'll routinely start offering SMA testing. If we can help save a few of my future friends and their mommy, daddy, and loved ones from SMA, then my life, while cut short in time, will be beyond fulfilling in stature.

I'm declaring Tuesday, May 1st, to be

"Ellen's Going To Love Me, But Not My Friends" Day.

Why?

I think Ellen is the perfect person to help me spread my message about SMA because she's compassionate, funny, and wants to meet inspirational people, which apparently some people think I am.

So here's what I need from you...

On Tuesday, May 1st, please contact Ellen for me as many times as you can and as often as possible. I'd loooooooooooooove you forever if you'll contact her numerous times throughout the day, but even if you only contact her once, I'll still love you! Also, keep in mind, while I want Ellen to be flooded with people sharing my story with her on Tuesday May 1st, you can start sharing my story with her immediately, if you haven't already been doing so.

CONTACT HER SHOW - Here's Ellen's webpage for "Do You Know An Inspiring Person". All you have to do is input your information, upload my photo (see below), tell Ellen my story (see below), and then click SEND.

In the TELL US YOUR STORY section you can...

WRITE YOUR OWN

OR

COPY & PASTE FROM BELOW (ADD TO THIS IF YOU'D LIKE):

Dear Ellen:

I'm writing about a 5-month old little girl named Avery who has an incurable disease called Spinal Muscular Atrophy (SMA). While SMA is the #1 genetic killer of infants & children under the age of 2, most people have never heard of it, there is no cure for it, and there's minimal clinical research being done to find a cure for it. Avery has created a "bucket list" of things she'd like to accomplish before she dies and one of those things is to be on your show to help spread awareness about SMA to protect future children and their parents/loved ones from SMA.

Since starting her blog 3 weeks ago, she already has over 500,000 page views, has been talked about in online news articles (including MSN, and she's been seen on FOX & CBS news stations throughout the country. Yet her #1 goal on her bucket list remains to be on your show so you can help her teach the world about SMA.

Will you please make time for Avery and help her achieve her #1 bucket list goal?

Don't forget to share my story by following & forwarding my blog, following me on Twitter (AveryBucketList) and Like Me on Facebook (Averys Bucket List)! While it may or may not help me in my lifetime, the more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will one day be a cure for children who already have SMA!

Also, my mommy & daddy wanted me to make sure you know that all monetary contributions will be used towards continued SMA awareness and the further advancement of research to find a cure for SMA. If you feel more comfortable making monetary donations directly to a registered non-profit organization, mommy & daddy strongly encourage you to please do so in my name to the following organization:

111 comments:

My family and friends have been wiritng ellen for the past two weeks in hope of cathcing her eye!! I have shared the story of your beautiful family to fellow college students,my church and friends. Her story has impacted my life in a way that cannot even be put into words!Stay strong!--your chicago supporters

Along with posting on Ellen's Facebook page, as well as contacting her through her website...I have posted your blog on a Facebook group that I am part. It is call The Fundus are in Abundus, and it is a private group. It is an amazing group of women (some pregnant, some already mommies), we all share our thoughts, fears, questions, etc. amongst each other. I posted the blog website, because I want them all to read about you, Avery, and about how STRONG, BEAUTIFUL, and INSPIRING you are! Also, I want to bring awareness to SMA! Thank you again Avery for just being YOU!

It amazes me that such a little babygirl can be so inspirational to so many grown adults. I have learned so much about SMA and valuing life since reading your blog. I will do all that I can to help spread the word about SMA and you site including messaging, tweeting, and facebooking Ellen. I wish that every person valued every minute of life that they are given the way that you do. If we are given 1 minute, 1 month, 1 year or a whole lifetime none of it really matters unless we live each and every moment to the fullest, and you already have lived your life fuller than most adults ever accomplish. You can scratch being a teacher off your list because you have taught me two things that I knew before but never truly understood until now. (1)Doing everything we can today because the truth of the matter is no one is guaranteed tomorrow. (2) Stand up for what you believe in even if you will not benefit off of it today. One day someone will and that makes it all worth it!

Dear Miss Avery,I have a little girl named Avery as well and she is 10 (almost 11) months old! You are the sweetest, bravest, cutest baby girl and I admire you (and mommy and daddy!) for sharing your story with the world. You define the saying "Live life to the fullest!" and you have changed my perspective on many things. Thank you for teaching myself and my husband about SMA. You have officially been facebooked, and twittered, and if Ellen Degeneres didnt know anything about you before she certainly will soon!Its crazy how you can love a little person that you've never even met!Audra

This is interesting. I went through 2 IVFs a couple of years ago and just called my specialist and they do not test for SMA while going through fertility treatments, unless it is requested. How can you request something if you have never heard of it. Thanks Avery for educating generations of families.

I will contacted Ellen. I have also made a tumblr/blog to help Avery get to 1000 smiles. It is called http://1000smilesforavery.tumblr.com/. I hope you can check it out. Oh, and the ticker on the side is how many smiles Avery has on that blog and this post http://community.babycenter.com/post/a32814965/1000_smiles_for_avery. Thanks. :)

I just thought of another lovely item for your bucket list. You could get all your friends to send you a postcard featuring their state, so you can collect one from all 50 states (and hey maybe even some countries too)!

I have read all of your blog posts. I laughed, I smiled, I cryed. I think you and your husband are beautiful people. The kind of people that make the rest of us try to be aware, loving, and caring people. Your story has touched me so much. I have made a donation to SMA research in sweet baby Avery's name. I'm sure you have been told this many times over, but you are beyond inspiring. None of us have a plan for tough unexpected situations. Your actions are the words that fill that unwritten book to show us how. Thank you for sharing your story. All the best wishes one person can give.

Done. I hope you get on the show Avery! Either way, you have educated so many about SMA. When I am up rocking my baby (she's almost exactly your age - y'all could be great friends!) I often think about you and your mommy and daddy.

I sometimes sing this song to my son but everytime I do, I think about you! Last night I told my little 10 month old, Noah, about you Avery! He agreed that this song is about you...I am glad you came by The Wanted

Can you spend a little time, Time is slipping away from us so stay, Stay with me I can make, Make you glad you came

The sun goes down The stars come out And all that counts Is here and now My universe will never be the same I'm glad you came I'm glad you came

Did you know that the Victor Center, in partnership with Atlanta Jewish Gene Screen, has a screening clinic for 19 of the genetic diseases, most common in Ashkenazi jews.(which includes sma) These tests are not just for jewish people, EVERYONE SHOULD GET TESTED. They are offering testing at a fraction of the cost, making testing available for all who want it. Please let everyone know about them: www.jewishgeneticanswers.org or www.victorcentes.org (877-401-1093.

you got it girly girl my mommy daddy and brother call me that my real name is Lucy. Mommy and I watch ellen everyday while my brother naps, i love that lady she so makes me giggle. Love your friend from Philadelphia Lucy

I found your blog off of Babycenter.com and follow it daily! I just emailed Ellen! Can't wait to hear if you make it out there!!! Hang in there sweet girl, you have people praying for you and your family from all over the world! :)

The first day I read this which was April 13th, I contacted Ellen and Oprah via their website so you can bet all the candy in the world what I will be doing on May 1sthave throughout the day! Hope you have a fantastic weekend with moments of laziness bc those are the best Friday nights through Monday mornings there can be!!! Sweetest dreams to the sweetest sweet pea ever!

I sent your message to Ellen, I hope you get to be on her show. I will definitely tape it if you are to keep because you and your mom & dad are such an inspiration. I wish I had the privilege of meeting you in person, you are absolutely precious. Good Luck.

Hello Mom, Dad and Avery.....I am so touched by your story and love how you have created this amazing blog, it's incredible. I have put you all on my prayer list and firmly believe no problem is too big for our GOD...he is the man of miracles. I am a wedding and family portrait photographer from California (Pismo Beach) and would love to gift you my services to do a family session for a keepsake you will have forever. I truly believe I was blessed with these talents to share with others. I am not sure financially how I could get to Texas but I would be honored to do this for your family. You can view my work at Blessed Beyond Belief Photography.com Please reach me at (805)710-1468 Dana Hodgkinson....Blessings.

Hello Mom, Dad and Avery.....I am so touched by your story and love how you have created this amazing blog, it's incredible. I have put you all on my prayer list and firmly believe no problem is too big for our GOD...he is the man of miracles. I am a wedding and family portrait photographer from California (Pismo Beach) and would love to gift you my services to do a family session for a keepsake you will have forever. I truly believe I was blessed with these talents to share with others. I am not sure financially how I could get to Texas but I would be honored to do this for your family. You can view my work at Blessed Beyond Belief Photography.com Please reach me at (805)710-1468 Dana Hodgkinson....Blessings.

This was amazing blog. i hope every wish on her bucket list comes true. if i had the money i would come to TX to meet her because i have truly became a fan with in 5 minutes. :) i will will share this blog everywhere!! i will pray fro her this sunday.god bless

Avery-My mom told me we just haaaaad to email Ellen for you, even though I was really tired from our walk and ready for a nap. I was about to unleash a tantrum when she showed me your picture and I guess I can calm down for a little bit for an older lady! Crossing my fingers Ellen calls your mom and dad!

Just read about your story and am going through your blog now. My heart goes out to you and your family. Very strong and loving. My heart aches just thinking of how little time you have to enjoy this world. I couldn't imagine. I emailed Ellen for you. Hope she puts your story on the show.

Thank you so much for sharing. I just stumbled on your blog tonight while surfing the web. I visited Ellen's website to nominate you and will encourage my friends to do the same. I will say prayers for you every day.

I have posted on Ellen's twitter and Facebook...I have also sent it off to be considered for Ellen's "Most Inspiring People". I have a 2 1/2 year old boy (Myles) and a 6 month boy (Levi) and my heart goes out to you and your family. I can't even imagine dealing with this. You are one incredible family and your story is so inspiring to me...I LOVE your blog - its real and to the point, I love Avery's point of view and even though this is such a tragic story - your blogs are inspiring with the right amount of humour to get everyone's attention, yet its also sends a strong message about SMA to pass along...I will pray for your family even though I am in a little town in Woodstock, Ontario (Canada) - your story has touch my life...Thank you for sharing your daughter's story and educating me on SMA.

My daughter and I, she is 2 and her name is Isabella Avery, love reading Avery's blog. She likes they have the same name, and she loves looking at pictures and videos! We have written Ellen, and will write every day until we see Avery on the show! Also, I am currently a nursing student, an one of my teachers is a researcher at Cincinnati Childrens Hospital. I have fowarded the blog to her. I hope she will also help spread the word! I hope you are able to cherish every day with Avery and for our part, we will help spread the word! Avery is beautiful, and we look forward to seeing her achieve more of her bucket list! Good Luck to you! Isabella and I will be sending a present for Avery as soon as we can! Good Luck and know that you are a brave, amazing, beautiful family...forever in our hearts!

I just have to comment because one of my VERY good friends has had 2 nieces with SMA and that is how I came to know about it. We would always compare how similar the situations with the genetics in my own 3 children with Fragile X Syndrome. FXS is the world's leading cause of inherited mental impairment and inherited autism and most people have never heard of that either. I feel such a draw to your cause because of your dedication to raising awareness as I do day to day with my own children. I applaud your work in what you are doing and your daughter is a beautiful inspiration. Thank you for sharing her life with us.

Hi Avery,I wanted to let you know that I just messaged Ellen and will continue to message Ellen until your on that show. I know it's very important for you and I want to help in anyway I can sweetie. I am a nursing midwife and I love children. I will continue to help in whatever way I can so that you have what you dearly want. I will continue to pray for you and your mommy and Daddy each day.Lots of hugs honey.Twitter: @CalliopP

Hi there :) Just posted on Ellen's 2 FB sites and will do so thru the weekend as well! I sure hope she can help. I sit here in tears reading your site and can only commend your brave actions and determination to celebrate Avery's life. And what a beautiful life it has been already. :)I was wondering if there are any fundraising activities planned in your area - Chinese auctions or the like? I make jewelry and would gladly donate some things to your efforts. Is there a ribbon color (like pink for breast cancer) that supports SMA research and awareness? Keep enjoying your bucket list activities (don't forget: Play with puppies!!) and blessings to your little girl. Snappher at yahoo.com

I think what you are doing is very inspiring! you have me in tears at work! you are such a beautiful little girl and I hope that you get to accomplish all your goals! I sent to Ellen so good luck and i will be watching for you! -Chrisitne

(wiping tears) i pray for strength for you and your family...avery you are beautiful.....i thank you avery for sharing your goals off of your bucket list and cant wait to see what else you have to accomplish. my 11 year old and i will be"staying tuned"!!! God Bless you avery, mom and dad for bringing awareness to this...

Just saw you story today through Yahoo news. I sent the message to Ellen and hope you get to tell your story there. I have been reading through your blogs, what an inspiring story. My thoughts and prayers are with all of you. Thank you for telling everyone your story to get the word out.

I have shared your story with Ellen and will ensure my husband does the same when we wakes up.... hmm, I may even fill one out for him :)I typically do not read blogs but found your story on the yahoo main page (you've made it big, girl! :)). Your parents love you so much and I thank them for sharing your story with the world. I have spent the last hour reading all about you and looking at your beautiful pictures! Though I may not ever meet you in person, I feel as though I already know you and I am thankful that your parents have taken the time to write your story and give me the opportunity to know such an awesome little girl. You may not live to have your first drink (well at least legally :)), but you have already inspired more people than most of us do in a lifetime! Some things for your bucket list, if possible:1: Have your mom and dad take you to an American Girl store and get you your very own! They can even pierce her ears for you!2: A dinner at Cinderella's Table in Disney World is fabulous! My daugther loves taking pictures with all the princesses... since you are a natural in front of the camera, this is right up your alley :)

On a final note, I plan to share your story with my Facebook friends to help raise awareness.

Live each day to the fullest and be good to your parents, they sure do love you! PS... it is OK to be crabby too-- life just stinks some days! :)

I won't bother writing a comment about exploitation or termination again "if you had known" you had a defective baby since it will never get posted. If you open yourself up to comments then you should post the good with the bad.My daughter and I have muscular DYSTROPHY (fix the spelling where you ask for donations)and I wouldn't change NOT having her for the world. It was worth my condition getting worse and it was worth every joy she has given me! You are not raising awareness for people like your daughter and people like me by telling us in the same breath that you would've liked a test so that you never would've brought this beautiful creature into the world! :P really? Because it will cause you suffering to lose her? It's a tragedy that Avery will not live a full life, don't get me wrong, but people lose children everyday to a multitude of causes and I don't think any of them would trade what time they did have to avoid the suffering of losing their child.Your insulting every disabled child born into this world, some of the most productive and heartwarming kids I have met have been in the hospital PT room or admitting. Count your blessings, not your pitfalls with this child. Take her home and enjoy her, away from the spotlight and the free trips your asking for. Love and time don't cost anything and doing all of this stuff won't make your loss any easier and it definitely won't make a shoe box full of difference to this baby, who doesn't even know where she is or what she's doing at her young age!! THIS list is for you and only you....if you cared about your child's "quality time" on this earth you wouldn't do any of it.AND please insist that people send money directly to the charity, IF what you want to do is make a difference for SMA and children like yours who are suffering from it. Trips to cross off items from your list, paid for by donors, is NOT going to help fund a cure.THE MDA is making strides everyday, contact your local chapter and get on their mailing list and attend the services they offer. They will help you deal with everything your feeling and going through in a conductive and productive manner.QUEST diagnostic is the only lab offering testing since they patented the test, this is why is so expensive and considered a luxury. My DNA testing for CMT type 2 with peripheral neuropathy cost 2,000.00 per type ( and there are 37 types) and we both had to have it done! Appeals were sent in and fought with our insurance and we had a viable illness!I'm not trying to be an ass here, i would just appreciate you removing the "if we had known we wouldn't have had her" testing push. WE are a mistake of nature, but we have made a difference in walking (scooter) for the MDA and running a Relay for Life Team for The American Cancer Society for the past 9 years, raising over 18,000.00 in that time. Even people with disabilities can make a difference in this world. FOCUS on the joy of your child, not what she can't give you. There are so many things to be grateful for in this world and having Avery is one of them.

It's not about feeling sorry for themselves its about them getting the word out, Its not about getting free trips its about doing stuff with their daughter that they won't be able to do because of the short life she will live. So please don't come on here and try and make these people look bad come on here and get awareness for families. Just like in your post you talk about you and your daughter are you looking for sympathy or are you bring people aware of your situation. Let this family live there life in happiness if this is how they want to spend time with THEIR baby girl then let them do so don't talk negative about. Its not about if they knew they wouldn't have had her. you can tell they are very blessed to have this baby girl. Its about not putting her through something,letting their baby feel any pain just as any mother or father would be like. I enjoy following along with her and living these things with her reading her stories and even sharing them all because of this little girl and her mother and father more awareness will be brought to SMA!!! you are a beautiful little girl Avery and you have a wonderful family!! Don't bring something Negative out of something so Beautiful.

I was very touched to read through your blog.I wanted to share with you that I am a researcher, and I research neurodegenerative diseases. Currently, I am not working specifically on SMA, but I have worked on it in the past and I hope my current research will help with understanding the different types of neurodegeneration.I was also personally diagnosed as an SMA carrier recently, as genetic screenings are very popular and somewhat subsidized where I live.

Avery My 3 children and myself have all writen to Ellen with your story. My children and I find you to be an inspiration to everyone. My youngest who is 14 has printed this off to have the kids in her JR Highschool all send it into Ellen. In your small time here you have done more with your life then most will ever do in 80 years. Keep fighting Avery you are an angel.

Avery, you and your parents are truly inspirational! I just shared your story with Ellen... and will do so again tomorrow, on Tuesday, May 1st, "Ellen's Going To Love Me, But Not My Friends" Day! Good Luck, Sweet Baby Girl :)

I have started following you and I am catching myself up on previous blogs in order to stay informed! Sometimes I'm crying really hard but just as it gets to the point that my heart is breaking, you make me laugh so hard!! Words cannot express what an inspiration you and you family are to me. Tonight I will sit my three teenagers down and share your story. I have already shared it with anyone I have had a conversation with in the past 24 hours, and I will continue. I just wanted you to know that I did the Ellen thing and it took 4 minutes!! You made it simple and she's my favorite too, so I have hopes that she will listen!! I plan on adding to Averys list ;)

You and your family are truly amazing. I sent something to your PO box so that you can cross 1 more thing off your bucket list. Stay strong beautiful girl.

"Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world. Believe with all of your heart that you will do what you were made to do."

Hi Avery! My Journalism class has been thinking of all different ways that we can help you! A few of us have been e-mailing Ellen and will continue too! You are such an inspiration that I know she will put you on the show! God Bless!Love Marti

First, thank you for sharing your life with all of us. I've been reading your adventures and sharing it with my girls who are now all grown up and also with my friends. I've sent Ellen your story and beautiful picture. I hope you get on real soon. Good Luck and God Bless you and your family.

You are a very strong little girl!! Definitely a fighter!!! Your story has touched me so much!! I'm in the process of going back to get my Certificate in Radiology so hopefully one day, I will be able to help mommy's & daddy's and their lil peanuts!! I hope you continue your journey & live a long, long happy life!! keep smiling girlfriend!!! You should add a trip to Jersey on your bucket list & dont forget the Jersey Shore ... if you ever make it up this way - i'd be honored to meet you!!! xoxo Gina

Hello Avery my lovely Angel - I was touched like so many others by your blog and your amazing parents. I had never heard of SMA either but will make sure that those around me hear about it now. I wanted to be the first to get to Ellen on May 1 so I just emailed all your information to her letting her know how special and inspiring you are.

I enjoy reading your blog and congratulate you on having an amazing bucket list of accomplishments! Thank you so much for sharing your incredible life with us - God BlessRhonda

http://averycan.blogspot.com/#.T5s89NyJp7A.facebook?m=1 Ellen, I'm hoping you have been bombarded by messages about this amazing little angel's story. very has something called Spinal Muscular Atrophy or SMA. It is a disease of the muscles that will most likely in the long run make her lose her precious live far before she should. The site I posted is her blog where she tells about her disease and how she is living life to the fullest. I would love to see her on your show as 1. It would get the word out about SMA and SMA carrier testing as well as 2. Avery coukd mark it off her bucket list. Please consider this beautiful inspiring angel. Thanks Brianna. Miss Avery this is what i wrote I hope it helps. Love from me and Harrison

I just started reading your blog today! Even though today is MAY 1ST i still tweeted and i hope to see you on the show today i am going to be watching for your pretty little face!! I didn't even know about SM A so i am very thankful that i found your blog now i can make myself more aware!

Little Avery - I found you through another SMA girl - Sofia - and just spent the last hour reading through everything on your blog. I also contacted Ellen today in your honor. Though you're no longer with us here on earth, I know up in Heaven you're still hoping everyone floods Ellen with your story, as am I. Your short life has made such an impact on people, awareness for SMA, and will continue to do so for many, many more years. Keeping your mommy &daddy, family, friends, and all of your SMAans in prayers. God bless you sweet Angel!

Even though you have left to meet your friends in Heaven - I still posted on Ellen's facebook page to have your parents be on the show so that they can share your story, cross this off the bucket list for you, and to spread the word about SMA. I work in a Children's Hospital in California and I see SMA regularly and support the parents through the difficult diagnosis and the unknowns of this condition. You are in my thoughts and my prayers. I know that your parents will love you forever and will cherish the memories until them meet you again.

Oh my goodness! I had NO idea this is what was going on today, but after reading Avery's bucket list, and had noticed she wanted to meet Ellen and spread the word, I decided to do just that! I am so happy I have been able to help you and your precious daughter Avery! I am so sorry for your loss. May God be with you and your loved ones at this time.Just know Avery is up above dancing around and running being looked after by her loved ones. She is watching her wonderful parents down below, waiting for the day until you can all meet again!

Even though you are now watching over your family and friends and won't be able to check this off your list, I to have posted on Ellen's FB page with your link. I hope your parents are able to check this off your list and are able to tell your story to her and spread the word even more about SMA, more people need to know. Your parents are incredibly strong and are truly an inspiration to a lot of parents who have children that are dealing with SMA or any other type of disease/illness or disability. May you rest in peace.

Tweeted, posted on her Facebook wall (as I've noticed MANY people have done) & contacted through her website. How she can not notice will be beyond me. I hope to see your family on her show soon. I admire you so much!! R.I.P. I'm so happy you got to experience so much in the time you were here. When your parents finally dance with Ellen, I know that you will be there dancing with them.

I think today is even more important than ever before and I have also messaged Ellen in the hopes that your parents can fulfill this bucket list item for you.

Rest well, Sweet Angel. Mommy and Daddy will make you proud!

Daddy (and Mommy) - What you have done. The example you have met...and this blog, a culmination of your work is nothing short of admirable and amazing. I hope you can find the strength to continue in your own words. You are in my hearts this evening and always.

I know you weren't able to check this off your list yourself, but maybe Ellen can have a special dance for you and we can get enough money raised to reach another bucket list goal! What an impact your story has made on so many people! Such a sweet little girl! R.I.P.